Participatory research with carers: a systematic review and narrative synthesis

Introduction: As Patient and Public Involvement (PPI) in research has become increasingly common, and research-based recommendations on its principles and impacts have been established.   The specifics of these are likely to differ when involving different groups.  Family/ carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have not yet been reviewed.  We aimed to systematically review and synthesize studies where family/ carers were involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. 



Methods: A search of five electronic databases and grey literature was conducted using a combination of terms relating to carers, involvement, and research.  Expert consultation and hand-searching were also used.  Following screening, data extraction, and quality assessment, a narrative synthesis incorporating thematic analysis was conducted.  The initial findings and themes were presented to a group of carers who had been involved in research, whose reflections informed the final synthesis. 



Results: 55 studies met the inclusion criteria, with diverse designs and participatory approaches.  Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change.  Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role.  The literature demonstrated how carers can contribute in ways that suit them, maximizing their impact, whilst attending to relationships and power imbalances.      

   

Conclusion:  This review synthesises different examples of how successful research partnerships can be built with carers, despite various challenges.  Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations.  Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed.